DIAGNOSIS

Lipedema is a relatively new disorder, in terms of diagnosis, in the US. As a result, awareness and understanding of the condition amongst healthcare professionals can be limited. When a woman who is healthy and has no other apparent contributing factors, seeks a diagnosis in the early stages of the disorder, it may be mis-diagnosed due to lack of awareness. In other instances, lipedema may be mistaken as lymphoedema.

Lipedema almost exclusively affects women.

What can you expect at an appointment for a diagnosis of lipedema?

Your healthcare professional will likely take a full clinical history along with notes of any relevant past medical history. This may include questions such as:

  • When did the symptoms start?

  • Has the condition progressed?

  • How has it progressed?

  • How does it affect you both physically and psychologically?

  • Is there a family history of lipedema or do female family members have similar symptoms?

  • Does it have an impact on your daily life (work, mobility, hobbies, personal relationships, clothing etc)?

Any other problems that you are experiencing may also be taken into consideration.

Other medical causes of symmetrical swelling in both limbs needs to be ruled out. This may include:

  • Heart failure

  • Chronic venous insufficiency 

  • Dependant (gravitational oedema)

  • Renal/liver dysfunction

  • Hypothyroidism

  • Pregnancy/premenstrual swelling

  • Obesity

  • Drug induced swelling

  • Lymphedema

Investigations to diagnose lipedema

A dedicated diagnostic tool is not currently available to help determine a firm diagnosis of lipedema – and no known urine or blood biomarkers can help either. As a result, it is important that any other underling diseases such as those listed above, are ruled out.

Your healthcare professional may initiate some of the following blood tests to try to determine any contributing or aggravating conditions. If any are found these can hopefully be addressed and treatment initiated, if necessary:

  • Urea and electrolytes (U&E’s)

  • Full blood count (FBC) 

  • Thyroid function tests (TFT’s)

  • Liver function tests (LFT’s)

  • Plasma proteins

  • Brain natriuretic peptide (BNP)

  • Glucose

Although hormonal factors are thought to contribute to the development of lipedema, there are currently no endocrinological tests that have been found to be helpful.

To determine if lymphedema is present, lymphoscintigraphy and ultrasound measurements may be carried out. If chronic venous insufficiency is suspected, a venous duplex ultrasound may be done. Other imaging investigations such as Magnetic Resonance Imaging (MRI) and Computed Tomography (CT) scans are not usually required unless uncertainty around the diagnosis remains.

Clinical examination for lipedema

A physical/clinical examination will likely be done by your healthcare professional. This is another important aspect used to make a diagnosis as characteristic signs of the disorder can then be detected. These may include changes to the tissues (for example, shape, size, texture, temperature), bruising, abnormal gait (walking position) and limited mobility. The Stemmer’s sign (the inability to pick up a fold of skin at the base of a finger or toe) will be noted; as will any ‘pitting’ (when an indentation remains after the swollen skin is pressed) edema which may indicate a secondary lymphedema.

Encountering dismissive and/or negative comments on a journey to obtain a lipedema diagnosis is described by some with lipedema however, awareness and education are growing. More healthcare professionals and general practitioners are learning more about the disorder and how to help those who are either diagnosed with lipedema or are suspected of having lipedema.